How to Manage Family Illness at Home

Family Illness at Home

by Gill Pharaoh

Published by Amolibros at Smashwords

‘An ounce of help is worth a pound of pity.’

Old English proverb

Copyright © Gill Pharaoh 2004 | First published in 2004 by Free Association Books

Electronic edition published by Amolibros 2012, Loundshay Manor Cottage, Preston Bowyer, Milverton, Somerset, TA4 1QF tel/fax 01823 401527

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The right of Gill Pharaoh to be identified as the author of the work has been asserted herein in accordance with the Copyright, Designs and Patents Act 1988.

All rights reserved. This book is sold subject to the condition that it shall not, by way of trade or otherwise, be lent, resold, hired out or otherwise circulated without the publisher’s prior consent in any form of binding or cover other than that in which it is published and without a similar condition including this condition being imposed on the subsequent purchaser.

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Table of Contents

About this Book

Explanation and Introduction

Foreword by Tony Benn

Author’s Note

Introduction

Chapter One

Chapter Two

Chapter Three

Chapter Four

Chapter Five

Chapter Six

Chapter Seven

Chapter Eight

Chapter Nine

Chapter Ten

Chapter Eleven

Chapter Twelve

Chapter Thirteen

Chapter Fourteen

Chapter Fifteen

Chapter Sixteen

Chapter Seventeen

Chapter Eighteen

Chapter Nineteen

Chapter Twenty

Chapter Twenty-one

Appendix

About this Book

This sensitive and compassionate book…concentrates on the patient rather than the illness. It is immensely readable and interesting because it is illustrated with many personal stories. Gill Pharaoh gives us hope and brings out the best in human nature which sometimes happens when people are faced with a real crisis.

Tony Benn

This book explains how to care for someone at home, through all the stages of serious illness, which in many cases may be a terminal illness. It discusses practical issues important to be addressed from the outset, from the shock of diagnosis, and into the day-to-day management of nursing someone at home.

Its ethos is very much open communication within the family, with a clear understanding that there is no absolute right or wrong way to manage in such circumstances. This is evidenced by the many examples the author cites of how different families have learned to cope.

Without recourse to easy, prescriptive answers, Gill Pharaoh hones her view that by offering practical alternatives, and discussing the various ways different people have managed in similar situations, families will feel confident when making their own decisions. It is written for the whole family, mindful that if at the end of the illness the patient dies, it is of critical importance that all concerned can feel they have done their best, and emerge free of feelings of guilt and regret.

As Tony Benn has said of this book, it is both sensitive and compassionate, with its emphasis on the patient rather than the illness. It has the virtue too of being borne of the author’s professional experience, and is illustrated with a catalogue of personal accounts. What Gill Pharaoh succeeds in offering us is hope and a reaffirmation of the best in human nature.

Gill Pharaoh has worked for many years in hospitals, hospices, and in the community, in palliative care and in general nursing care.

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Explanation and Introduction

Reviewing this book was a labour of love. In many ways, given her broad experience in a variety of different areas, Gill is uniquely placed to write this sort of book in which she has combined a personal and professional outlook. I think it will appeal broadly both to patients, carers and professionals. In particular, it will be an extremely valuable resource to be turned to by those thrown into the situation of facing terminal illness.

It should also appeal to hospital and community-based professionals as it presents an unusual perspective, bridging patient and carer concerns, but seen through the eyes of an extremely experienced and knowledgeable professional.

In this review I have deliberately avoided areas where I might slightly disagree about emphasis. This book represents a highly personal view, reflecting a unique perspective on a difficult subject. However, it is important to note that Gill has deliberately sought to avoid excessive technical discussion. In particular there are only brief details of drugs or interventions such as catheters, oxygen cylinders or mechanical support including ventilation. I think that this was wise – medical fashions change regularly but this book concerns more permanent issues.

The use of individual case studies is a particularly valuable technique providing the patients are carefully made anonymous. One has to be a little careful however, as some patients and carers have differing views among themselves and with others. It is important not to seem judgemental or pejorative of certain attitudes. Gill treads very carefully and, in her usual tactful manner, avoids these criticisms. On the contrary the use of individual cases does serve to highlight issues in a way that the most detailed scientific medical writing fails to do.

I greatly favour the general tenor of the book with an emphasis on caring at home – we have gradually drifted away from this approach yet the truth is that most patients with terminal illness spend the vast majority of their time, not in hospital or hospice, but at home surrounded by their family. I recognise Gill’s point that people change with the sudden and often devastating demands of unexpected severe illness and dependency. This change is reflected in both patient and carer and can place intolerable strain on both parties and the rest of the family, often including children.

The structure and order of the chapters is thoughtful and, like Tony Benn, I greatly appreciate the emphasis on the carer at an early stage and not, as occurs in other books, tagged on as an afterthought.

‘Handling death appropriately’ is so important. Most people rarely have experience of anyone dying in front of them and, when it is a loved one, the experience can be devastating. Gill copes with this issue in a careful and sensitive manner, which would be of enormous comfort and help to those placed in this position afterwards. There remains an enduring wish among many bereaved to look back and blame themselves for something done or not done. Similarly a sense of anger towards their loved one, themselves or, more commonly, towards the carers or doctors can be the overwhelming emotion experienced. Again, it will be a source of relief to many to realise that they are not unique and that these experiences are in fact relatively common.

There are really so many points raised by this book that I cannot go through them all. In any case I largely agree with Gill’s views on management and I greatly applaud the sensitivity and shrewd way that she has been able to illustrate the issues using individual experience but without causing any offence. I would be happy to provide a more detailed review if necessary.

I have not undertaken a detailed critique of all that is being written as this is neither my role nor is it necessary. However, I must emphasise that I have attempted to highlight a few of the reasons why I considered this book to be an extremely valuable contribution to the literature concerning terminal illness for patients, carers and professionals. It is a book that ‘needed to be written’ and I am delighted that Gill has crafted such an outstanding and valuable contribution.

Robin Howard, May 2004

Foreword by Tony Benn

This sensitive and compassionate book is about palliative care, which concentrates on the patient rather than the illness, and the author has had a long personal experience of work with those who are dying and those who care for them and their families. It is the most moving and useful guide as to what to expect and how to deal with the many problems they face.

It is immensely readable and interesting because it is illustrated with many personal stories and deals with every possible aspect including the emotional needs of the family when they hear of terminal illness, who they should tell and how it should be done, including the responsibility of telling children, how that news is taken and how they may be helped to survive the emotional stress.

It has advice on staying at work for as long as possible and what happens when it is no longer possible to do so, and has a very important chapter on caring for the carers, who are so often overlooked, are under tremendous strain and need respite care themselves, and time to recover from the stress they experience.

We read about the physical needs of those who are ill, how they should deal with medication, and how they can access mechanical aids and appliances, taking into account the problems that are faced by families when mental health may be affected, with an account of the wonderful contribution made by hospices.

One of the most sensitive sections deals with the role of anger by patient and carer, giving advice about depression and isolation, and recognising that many people towards the end argue for euthanasia and even plan suicide.

Inevitably, since the illnesses described lead to death, Gill Pharaoh offers us advice on dying at home or in hospitals, how a funeral can be arranged, and how to deal with bereavement, including advice on what to say and what not to say.

Her last section looks forward to the problems of starting a new life, which is very difficult for those who are left alone, and have to plan for a future without their loved one, even touching on the issue of new relationships that may open up and how to cope with them.

Like many families, I lived through my wife’s long illness and tried to provide what care I could when she knew she was dying and was determined to live her life to the full and enjoy every minute of it, arguing that she was not battling against cancer but living happily with it – only regretting that she would not live to see our grandchildren grow up.

She said it was a test of character, and so it was, and I realised that she had taught me how to live and how to die, but how I wish we had had this book to consult during those stressful four years before she was released.

Many books are published about birth, sex, marriage and relationships, and many lifestyle programmes appear on television and personal stories are printed in our newspapers, but we hear very little about death, though it is an experience common to us all.

This is a truly remarkable book; it should be on everyone’s shelves, either to consult when needed or to lend to friends who have to cope with the many difficulties we all have when we face the end.

Despite the fact that it is about death Gill Pharaoh gives us hope and brings out the best in human nature, which sometimes happens when people are faced with a real crisis, and find themselves struggling with problems that are unknown until they arise, and in circumstances that are beyond their direct control.

Tony Benn, 4th April 2004

Author’s Note

I would like to thank the following people for the part they have played in finally getting this book on the shelf.

First of all my family, Caron and Mark, who from a very young age encouraged and supported me in my career changes, and from great distances, still do. Now joined by Jill and grandson Reuben.

And thank you to John, my long-time partner, who has given a lot of his valuable time to advise, instruct, criticise, and support me for the last twenty years (skills not always appreciated at the time!). He has also proved to be an excellent secretary!

Many thanks to Robin Howard, consultant neurologist at the National Neurological Hospital, Queen Square, for his thoughtful and helpful review of this book, and to Tony Benn, for his enthusiastic and generous foreword.

I owe a great deal to Philippa Gale, my oldest friend, and to Yvonne Thomas, for their patience and skill in reading and re-reading this manuscript and being truthful in their comments and generous with their time.

And finally I remember the many people who influenced me over the years; some were my co-workers, specialists in their field, but most were those sick people and their families, with whom I became very close for a short and sad time, and from whom I learned so much.

Introduction

Why this book?

Every day, hundreds of people make an unexpected transition from housewife, mother, friend, lover, son, daughter, to ‘carer’. They usually have little warning, no real chance of refusing, and very little idea of what is expected of them. These people may be family members, neighbours, men or women, old people and children as young as nine years old, and sometimes even younger.

What is a carer? Is this a new role? Why haven’t we noticed this happening in our communities in the past?

Not so long ago there was time to recover from a hospital experience while the patient was still in hospital. Hospital admissions were planned to a large extent, and people were admitted on the expected date, usually the day before the operation or treatment. People were in hospital for long enough after their surgery to be able to sit around the ward, to help out less able patients, and gradually become a little stronger. Often before returning home they were also offered a week or two in a convalescent home or a cottage hospital. Generally the district nurse followed through the care once they were back home, to make sure they were managing well, and to reassure and support them as they returned to full health. When medical staff talked about community care, that was what they meant. And most important of all, once at home, many of the patients were within reach of family, and had neighbours whom they knew well who had the time to pop in and out, and help out on a regular basis. The result was that the patient had time to regain their confidence, which often takes quite a knock if the illness is unexpected.

The tendency today is for people to spend as short a time as possible in hospital. In theory, this suits the average person very well indeed, since most people do not particularly enjoy their stay in hospital, and prefer the familiarity of their own home. Their admission is often in doubt until the last minute because of shortage of beds, so they are less able to make definite plans for their return home. For someone in pain, or anxious about their health, this uncertainty about the dates increases their anxiety.

Modern, improved techniques in surgery and anaesthetics, and greater understanding about the process of healing, mean less trauma, and less time in bed for the patient, who is encouraged to start moving as soon as possible. This is better for the patients physically, but is also often rather traumatic as well, giving them no time to settle in and to get to know the staff caring for them. And if they have fairly major treatment they have no time to recover their self-confidence following the hospital experience.

Changes in the way the National Health Service is managed mean that ‘care in the community’ is now normally the preferred option of hospital staff, and community staff. Hospital care is expensive, and beds must be given the maximum use. Hospitals are more specialised, there is often a shortage of nurses and doctors as well as technicians in all areas, porters and all the other staff required to support a stay in hospital. Also hospitals resort to using agency staff, so the continuity is lacking for both staff and patient.

For all these reasons the patient is sent home as soon as is possible, and the bed used again for someone who can be easily identified as more in need of a bed. So people are leaving hospital when they are still physically weak and still in need of nursing care. As a result ‘care in the community’ has come to mean a much more intensive and broad-ranging service, covering all aspects of illness, including many treatments traditionally given while in hospital, up to and including the death of a person. If it is possible to continue a treatment at home, then the patient will be discharged.

Unfortunately as all these changes were in process, the smaller hospitals that often gave good convalescent care, and also dealt with minor illnesses and operations, were being closed. Experienced staff who did not want to work in high-pressure intensive units left the profession and were not replaced.

Working in the community, in the homes of sick and often frightened people, is a skill that district nurses and healthcare workers are not necessarily born with, but that takes time and experience to develop. Even if the desire to care is instinctive, the expertise is not. It is a learned skill. It takes time and strong motivation, which many carers do not necessarily have.

District nurses and GPs are trying to deal with huge numbers of patients and a massive increase in paperwork and record keeping. Many district nurses now have a caseload of more than ninety sick people on their books, compared with thirty or so only thirty years ago. They cannot make the time to listen and support in the way they would choose to do. They no longer forge the same strong bonds with members of their local community, because they do not know them in the same way. Record-keeping regulations mean that the district nurses of today have very strict time limits imposed on them, which do not allow for the quick informal visit that, in the past, often prevented problems developing, or at the very least anticipated and identified them earlier.

In the main, people suddenly projected into the new role of carer do a remarkable job. Even with a great deal of help it is still a sad and painful path to have to take. If they get only minimal support, the carers pay a huge personal price, and this is often a source of concern to the person who is ill and to the relatives. It also protracts the effect of the illness and often leads to mental and physical illness after it is all over. At the very least, it makes coping with bereavement all the more difficult.

However, there is another side to the situation. If someone can be cared for at home with support and help from the right people, the whole experience can be valuable and memorable, and, even when it ends with the death of a loved one, can be experienced as a source of satisfaction and comfort to everyone concerned.

This book tries to give some ideas on how to manage some of the situations that may be met by the carer, and the person for whom they are caring.